what to do when...

[NinjaLady]

My PALS can't sip liquids or eat applesauce to get his pills down? I see him struggle now to suck the fluid through the straw and have asked the palliative nurse how he can take his meds if he can't swallow them this way and she said we just don't give them to him if they don't come in a dissolving form. She said at that point the goal will be comfort care. He doesn't have a PEG and FVC is too low now to get one and they also said no to a RIG. I will try applesauce or anything else to get them in for now, but once he can't eat/drink/swallow them without consistently choking and can't ingest them on his own...is that it, or is there something else I can do?

thank you in advance for your suggestions/ideas

 

[lgelb]

I don't know who said no to a RIG, but if he wants one, there is good literature to the effect that even with FVC<20%, if he's on BiPAP during the procedure, it can be done. What is his breathing/use of BiPAP like? You may need to shop centers or if there is truly no BC option, of course, there is Seattle.

Not knowing what the palliative care/hospice continuum is in Canada, my question would be what his life expectancy is and what his wishes are. If the goal is not extending life at this point, then I can understand why a RIG wouldn't normally come up and perhaps not be reimbursed. But if he still has goals/milestones to meet, he should be entitled to a RIG if/as he understands the risks of the procedure and the implications for using it.

Most meds come as a liquid or fast-dissolve tablet or can be crushed, then dissolved in warm water [so long as not on the Do Not Crush list, mostly ER/XR tablets]. Let us know if there's a particular med none of this works for, as often there is a close substitute that does.

Best,
Laurie

 

[affected]

I'm so sorry, it's awful to watch.

What meds is he needing to take? Some can be given by patch or injection for comfort care.

 

[NinjaLady]

Yes, so hard to watch...all of it really as we all know.
Thank you ladies for the replies.
He isn’t on BiPAP and isn’t interested “at this time” which i have respected.
Baclofen, nuedexta and an SSRI mainly. The dilaudid is liquid already and Ativan is melting tab.
There are plenty of milestones since we are in our 30s but none discussed, or any EOL discussions really as it is too hard for him to cope. There was no interest in a peg/rig and I asked the neuro and pulmo about a rig and they said they dont do them. Probably for liabilities reasons. Not sure.

Thanks again

 

[lgelb]

Celexa, Lexapro and Prozac are available as liquids in the States as are generics like the equivalent of Zoloft (not sure re Canada, but again, there is shipping), and so is baclofen.

Many (not ER, CR, Weekly or Pexeva) also be crushed. Nuedexta can also be crushed. Some crushers are better than others. I like the kind that twists. Some like the kind you pound. So you can crush/dissolve/slurry tablets in something that goes in a spoon. For capsules, you can open the capsule and discard the shell.

Besides applesauce, smooth pudding (the kind you buy already prepared) or yogurt may work better.

 

[NinjaLady]

That is good to hear. He is on Celexa. The Nuedexta is a compound here so it is in a capsule which I can open and slurry. Thanks for the advice/tips!